Thursday, 15 May 2014

How I Started Campaigning - Twenty Five Years and Counting! (Part One)

It’s twenty-five years (almost to the day), since I ‘became’ a Disability Rights campaigner. Although, as you’ll see, there was no long-term plan or anything like that, just a little voice inside a little girl who had realised, I was different. That was then.

As a ten-year old, I wrote to the then Prime Minister John Major to voice my concerns about the cuts in the Special Educational Needs budget. I remember being panicked when I heard about such a plan. Having recently transferred from my beloved ‘special school’ to a mainstream primary school, I knew I was struggling to settle in. I was ‘different’ there.

How would some of the worst effected children cope if they were forced into a mainstream school situation, without the care and help they needed?

Society didn’t cater for us, and I knew it. Propelled by some unknown force within me, I sat and wrote my letter. The next day my Mum posted it.

At my previous school I was just one of many people with a disability. I had been bullied for a while, granted, because I frequently got my work done early and was able to spend my time writing stories, or doing the thing I really loved which was helping my friends. It broke my heart to leave, but I know my parents made the right choice for me.

Until quite recently I used to think that letter was the start of it, but looking back I now realise that my activism started even earlier than that – it started as young as eight. The day I decided to try to change the way disabled people and disability were perceived.

I made a small decision inside myself (at least I thought it was a small decision then) that maybe I could focus on the good things disabled people can do. Not physically, so much; not in terms of proving we can ALL climb mountains, become superhuman elite athletes. That’s what the media want you to believe, as a way of making you doubt those of us who can’t.

Back then, to the little girl who was me, it was just a case of wanting people to understand. Understand that I could do things, and that I wanted to do things. I wrote a little book for my school library about my disability: how it happened, and how it made me different to other children – how I was just Helen.

I’ve been writing letters about various different disability related issues, doing assemblies and lessons in school and fighting access issues ever since. Some have got me local press coverage and support, some have been left unanswered.

Dealing with hardship, discrimination, prejudice and unfairness as a disabled person isn’t new. Dealing with it on the scale dished out at the hands of our own government is. That’s the main thing that has changed since I started.

For me, that says it all. It has gone on happening, but I never dreamed back then that I would feel as ignored, victimised and hurt as I do now, and that’s why joining up with others is so important to me.

When I brought my campaigning online I knew something was going to happen. I knew something had to happen because there were a lot of frustrated, angry, isolated and frightened people out there (myself being one of them). People who were facing uncertain futures as a result of the Tory-led coalition government’s plans to cut benefits.

I wanted to know if I was alone in feeling victimised and persecuted, just because I was unfortunate enough to be born with a physical disability affecting my ability to walk or even stand unaided. I was sad, but also relieved to find that I was by no means alone. In those early status updates and blogs we discussed frustration, anger and pain at what had been thrown at us. I was assured that something was happening, so that we could, at the very least, have our say – I felt better.

On top of that was the negative press, and downright lies, people on benefits are still being subjected to. When you campaign alone, it can seem like you’re getting nowhere and I was tired of being ignored

Campaigning with others refreshed my sense of purpose I felt I was beginning to lose. Even though I have a wonderful marriage and my writing, there were so many pieces missing. The government attacks and negative press just heightened that feeling. I needed to find a way to carry on with my ‘little decision’. I’ve changed in some ways, even since I brought things online.

I prefer now to do things my tried and tested way, rather than get too involved in what groups, and meaningless campaigner hierarchies do. That is not me. It hasn’t been for the last twenty-five years, and it certainly isn’t now.

In terms of the conditions I have, my Cerebral Palsy will never go away. If anything, my mobility will deteriorate further as I age. ‘Wear and tear’ will take even more of a toll on my body. There is exhaustion, pain, and difficulty every day, which has been added to by worsening endometriosis.

I’ve battled with clinical depression since I was fourteen years old, which has only been compounded by the actions of this government. I never thought, twenty-five years later, that disabled people would be in a worse situation now than we were then.

I want more than anything to be a mother and live a normal life. I want to do the things others take for granted, but I don’t have those options and it’s not my fault.

As I said, we are being victimised, vilified and pushed out of society. We are having to fight for the basics that other people take for granted. Back then, at least we could be sure we were wanted in society, and the support and care we needed was there. Now we do not have that certainty.

Disabled people are suffering and dying at the hands of an compassion-less and brutal government. A government which has lied, cheated and turned the media and society against us.

If you’d told me that this would happen, I wouldn’t have believed you, but it has, and it is STILL happening!

If this government isn’t stopped, and if people don’t wake up to the pain and suffering being caused to some of the most vulnerable people in society, I dread to think what our situation will be like in twenty-five years time! I don’t even want to think what it’ll be like in two years, if this government wins the next election. It terrifies me!

Will there be anything left to fight for? I doubt it! Will disabled people like me be pushed back into institutions, so that we are ‘out of sight and out of mind?’

Will Disability Hate Crime rise even further than it has under this government already?

Will I still be waking up sweating after another nightmare about the Work Compatibility Assessment? I hope not! I don’t think I can stand it, and I know I’m not alone in that fact.

It frightens me that the future of sick and disabled people in this country is in the hands of heartless, out of touch politicians and an electorate that isn’t being told the truth. One of those ‘truths’ being the real level of benefit fraud, which is much, much lower than the government and the media would have you believe, or the devastating impact Welfare Reform has had on our lives.

If we are to carry on fighting for a cause I’ve always loved and believed in please, please help us. We can’t continue to fight for a better life for disabled people, or even go on living, if there is nothing left to fight for!

About Me

From the age of 9 days old, I've had the disability Cerebral Palsy. For me this means I have to wear splints and use crutches to walk.

In 1995, age 14, I spent 4 months in hospital having had major orthopaedic surgery. During that time, I had to learn to walk from scratch. Not an easy task! But I am so proud that I did it.

The Cerebral Palsy is hard to cope with some days. Especially when the pain in my hips is bad. And yes, there are days when I wish, more than anything that I could do what other people do.

What would I do? Well, I'd love to run up and down a flight of stairs! I'd like to carry my dinner in from the kitchen, I'd like to Ice skate and, I'd like to dance.

More often than not though, I accept that CP is part of who I am. It's helped to give me a fierce determination, and it gives me an understanding of people that I don't think I'd have otherwise. I can empathise with them, and apparently, I'm a good listener. To me CP has given me all that. It has also given me the ability to write.

I am very lucky to have found my lovely husband. Ours is an age gap relationship. We met when I was doing voluntary admin work at my local Citizen's Advice Bureau. He is a wonderful, kind, sensitive man, who accepts me as I am...warts and all!

After a lifetime living with CP, suffering from clinical depression and having had 2 miscarriages, I am proof that you can find happiness. It's the little things that really matter, and I know that if you don't take anything for granted, and you keep going, IT IS POSSIBLE to be happy, and I know I'm lucky.